Monday, December 21, 2009

Rethinking Reform: Should we give the government more power, or revisit the way medicine worked prior to the rise of managed care (HMO)?

Happy Blizzard Week! I hope everyone on the East Coast is enjoying the snow and that no one has been in an accident while driving, fallen down on the ice, or gotten stuck in the snow while trying to get to the mailbox (OK, yes, I got stuck in waist deep snow on my way to the mailbox... I didn't even make it down the steps. Phil very carefully pulled me out; luckily, no harm done!).

If you've been following me on Facebook, you know I've had a very "medically eventful" autumn. I'll ramble about that drama in my next post, but in this one I wanted to share a very concise solution to a number of issues related to "health care reform" (HCR). I have finally taken a stand on the topic, and I've discussed my personal experience and opinions below.

The following is taken from my LLMD's website. Read it and ponder on it. It's what inspired my position on HCR and I hope it will get you thinking, too.


"Philosophy for a Distinctive, Compassionate, and Sustainable Medical Practice


In the typical primary care medical practice the physician contracts with one or more
insurance companies. The insurance company and the contracting physician negotiate
set rates for each type of visit, diagnostic test and medical procedure. This guarantees
the insurance company a cap on costs and allows the physician access to the insurance
company's patients. However, insurance reimbursement rates leave little or no room for
a profit. If the primary care physician is to keep afloat they must have a high turnover of
patients. This usually entails strategies like double-booking time slots in the schedule,
and limiting patient visits to 15 minutes or less. Further, the schedule is booked weeks
in advance causing patients to face long delays in getting appointments. Physicians
don't like it. Patients don't like it. The quality of care sometimes suffers, and nobody is
happy.

The solution is to avoid these inefficient contracts. This has two effects. The first is that
the physician sets the price for each service and is paid directly by the patient. If the
prices are too high or too low, the business is not viable. The market guides the price,
not some third party insurance company whose primary obligation is to the bottom line,
not the patient. Secondly, the physician can dramatically cut overhead costs by
eliminating the need to staff and equip a billing and collections department. With
reduced overhead, the physician can spend more time with each patient for a
reasonable price. This is not a new idea. In fact, this is how medical practices
functioned prior to the HMO revolution in the mid 1980's. It does not mean that the
patient is necessarily responsible for the entire bill. Depending on the patient's
insurance coverage, the patient can submit the amount paid for reimbursement from
the insurance company. If the patient has an HMO or Medicare, the patient may not get
reimbursed. If a patient has insurance, blood tests, x-rays, and hospitalizations will
likely be covered. We recommend checking with your insurance to verify coverage
issues and reimbursement procedures." -CMW, M.D., Virginia

It's the simplest solution to the issue that I have ever read -- it takes power out of the hands of insurance companies and puts it in the hands of the patients and doctors. It even allows the uninsured to get qualified medical care without going to the ER. You see, hospitals can't turn anyone away, so lots of uninsured people go there for common acute illnesses like strep throat, where it costs exponentially more to treat them than at a PCP's office. The bill usually ends up being swallowed by the hospital or government, raising health care costs across the board. That's a huge part of the current campaign in Congress to "reform" health care.

Consider the way my doctor's philosophy contrasts with the current federal majority party's approach to HCR. Personally, when I read it her philosophy for the first time, I had an "AHA!" moment. I'd been ambivalent about reform because while I didn't really like the plans being discussed in the House and Senate, I didn't have a better idea. Well, I do now. It's a real, compassionate, free-market solution. There has been criticism about letting health care exist in a free-market environment (like with HSAs). But this idea is different; powerfully simple, straightforward, and accessible.

I was working for Congress when Medicare Part D was passed, so I know a lot about the way government run health care works after the legislation is implemented. I fielded hundreds (no joke) of calls from senior citizens who didn't understand this latest addition to their coverage. Somehow, the federal government often manages to complicate social programs to the point that the people they're intended to help can't understand them. I had a manual explaining the program and a college education, and still had trouble figuring it out!

That said, the idea of improving and expanding coverage as simply as possible appeals to me.

The following is an anecdotal, but expansive, recent history of my health care coverage:

At present, the only way I am able to get health insurance is through a law in Virginia that states that insurance companies must insure any individual seeking coverage, regardless of their health grade (1-4, one being perfectly healthy and four being chronically ill, or having ever taken an anti-depressant... I kid you not). However, the insurer is allowed to charge the patient the highest possible premium. People who are 1-3 on the scale usually won't be refused coverage, and therefore wouldn't pay the maximum premium; it's just people like me -- the 4s -- who are too sick to work and therefore can't get employer health insurance.

Additionally, I do not qualify for Social Security Disability (which would help defray costs) because I haven't worked for five consecutive years and therefore hadn't "paid in" enough money. The reason? I went away to college when I was 17 instead of getting a job straight out of high school (I even skipped my senior year of HS, for the record). I graduated at 22, and got two job offers before I even took my exams. I accepted the one with the better health plan, which I felt was the responsible course of action, and started work three weeks later. Two days after I started my job, I had to be admitted to the hospital. It was the beginning of the end. I worked for six months before my 5'6, 92 lb body became so frail that I could no longer stand without falling. I was fired because of my health at age 23.

Because I had only been employed for six months, I only got 30 days of COBRA. I had to get an individual policy fast. My father paid for it, since I had absolutely no assets and certainly couldn't work. He chose a high-deductible Health Savings Account (HSA). The premium was initially $450/month, with a $3,000 deductible and a $5,000 cap on prescriptions. During the diagnostic phase of my illness, that worked well enough, but once I was diagnosed (with neuro-Lyme) and started treatment, the policy became virtually useless -- just a fallback in case I got cancer or fell and broke my neck.

You would think the situation couldn't get much worse, but two years later I'm still fighting that disease (and about four others, as you all know), and as of last month (11/2009) my monthly premium was raised to $772/month from $537/month -- a 43% increase from the previous year.

Were you able to follow that web of information? It's not "simple," that's for sure.

My coverage history raises many questions about what's needed in health care reform. Should we be giving insurance companies a break, or putting regulations on them? Should we add new programs, expand old ones, and create new departments for oversight, or should we simplify the doctor-patient-insurer (whether the insurer is private, Medicare, or Medicaid) relationship? Do we put health care in the hands of the government and insurance companies, or in the hands of doctors and patients?

Personally, I am no longer a patient of any doctors who participate with insurance companies. We have put my care -- my life -- in the hands of doctors who don't double book, who treat as they see fit (without having to worry about intimidation or threats from the insurance companies), and who keep their practices small enough to know every patient's case by heart. I no longer dread doctor visits, knowing I'll have to sit in noisy, crowded waiting rooms just to get 10 minutes of face time with the doctor after waiting for an hour. Now the "waiting rooms" I sit in are more like meditation rooms -- places of peace and quiet -- and I'm never in them for long.

I don't have to deal with a billing department, talk to a physician's assistant, or tell a nurse why I'm there and then repeat everything to the doctor -- wasting time. I'm not rushed in and out the door. A standard office visit is 30 minutes long and every single minute is spent with the doctor: no nurses, receptionists, or other staffers. An extended visit is usually about an hour: again, every minute spent with an MD.

All of my doctors have degrees from Ivy League medical schools; they are outstanding experts in their specialties. And all of them have opted out of the insurance run-around in order to take the best possible care of their patients. Shockingly, they charge very little money, especially considering the time and expertise they provide. They are available twenty-four hours a day, seven days a week, and they don't charge for after hours calls. My PCP even makes house calls for established patients -- for no extra charge other than travel expenses.

There was a time when doctors like mine were the rule, not the exception. Wouldn't it be nice if everyone could have that level of care? Guess what: everyone could. Most people don't need to see their doctors very often, so it's not like paying the doctor and then waiting to be reimbursed by the insurance company would be an unbearable financial hardship for most. The government could legislate reimbursement for those people who need Medicaid/Medicare from providers who don't participate with Medicare/Medicaid (something they don't currently provide). People wouldn't be running to the ER for a sinus infection because that's the only place they can get free treatment. They could get regular check-ups and preventative care, saving billions by stopping problems before they start. And, as the philosophy above states, the market sets the price: if the cost is too high, the doctor's practice will not survive. That's what keeps costs reasonable.

If every doctor stopped participating with insurance companies, and patients started filing claims themselves, the doctors could afford to support themselves without overbooking. Insurance companies would be background noise in the medical community, instead of stomping around and brandishing big sticks, using their money and influence to create policy.

To be fair, universal coverage is what Congress is trying to accomplish. However, they're pushing quantity and ignoring quality; treating doctors like the greedy bad guys, and rewarding insurance companies -- which are businesses run for profit -- BIG profits! What good is it for everyone to have coverage if the care is going to be sub-par?

There's a lot of controversy surrounding this, but I've finally found where I stand. I don't need 2,100 pages of text to outline health care reform and expand coverage. Two paragraphs are enough for me. It seems to me that sometimes, when you least expect it to be true, less is more.

**For the record, I know some of this might be tough to swallow, but I didn't make it up. There are some great books and documentaries on corruption in the health care system. I highly recommend the documentary Under Our Skin (recently short listed for an Academy Award Nomination): it discusses the corrupt relationship between insurance companies and the doctors on their payroll -- it focuses on Lyme disease, but as you can imagine, the type of activity they uncover is widespread. The film is two hours well spent, I promise!**



Friday, September 4, 2009

My Best Friend

I seem to have a bad habit of either being too sick to update my blog, or being too thrilled about feeling OK that I'm too excited to sit at the computer. Unfortunately, I know that leaves you waiting anxiously to find out what I'm doing (*insert sarcasm here*).

But before I indulge your curiosity, please take a moment to look at the blogs I'm following, and click on Jessica's Journey. Jessica has Chronic Lyme Disease with some really serious complications. She's been fighting these issues for years now, but she is starting to make progress thanks to a procedure called "Ketamine Coma". If you click the link, you can read all about it, and all about Jessica.

What you can't find there is why Jessica matters so much to me, personally. As you know (if you managed to read the whole story), I've had Lyme disease since I was three years old, but I was diagnosed with Lyme and several other tick-borne diseases when I was 21 (four years ago). Treatment helped initially, but I relapsed, and suddenly I went from being a college student with a 4.0 to being crippled due to illness and losing my job. It was that second time around, when I felt like all hope was lost, that Jessica entered my life. I joined a Lyme Disease Awareness support group on Facebook, which she created, and we became fast friends. (That's the same group I now help administrate -- a group with 9,629 members who are Lyme Literate, thanks to Jessica. )

Jessica brought people into my life who were able to provide real solutions to my quickly worsening problems. She introduced me to my hero, Dr. L, and personally instructed him to take excellent care of me -- and he's never failed to do so. When I started to have strange neurological symptoms, she made sure I got an appointment with Dr. B, who figured out that I had severe epilepsy as well as narcolepsy, and found new ways to manage my treatment that minimized the number of pills I had to take and the side effects from them.

More importantly, however, Jessica brought her goodness, love, faith, and hope (as well as a shocking depth of knowledge on tick-borne diseases) into my life. Her support, candor, advice, and ability to laugh when anyone else would have cried -- both at her own struggles and at mine -- provided me with a light in the darkest hours of my illness.

Jessica needs our prayers right now. Please, read her amazing story, and tell your friends about her. She saved my life... I want to do everything in my power to make sure she gets hers back, too.

Love y'all,
Cat

PS: In case you are reading this for an update about me: In July, I switched from Minocycline to Amoxicillin as my antibiotic (ABX). Almost immediately, my life turned around. I went to the beach on Hilton Head, SC, where I started swimming, playing tennis, walking, laughing, laying in the sun, listening to music, playing golf, shopping, horseback riding (I actually fell off!) and doing a thousand other things I never dreamed I'd do again.

Most of all, I started to hope; to think of the future and to believe I might have one.

Unfortunately, one month later I managed to get swine flu. I didn't even know it was in America, let alone that there was an outbreak in my town, so I didn't seek treatment right away. I did get Tamiflu after about 12 days, but my immune system was already down by then, and I picked up another infection. I suffered through that for another week before calling my doctor and telling her I'd now had a fever for almost 20 days. She said I had to go in for a physical exam. I did, and the doctor said that I was clearly sick (my temp was 100.1 degrees), but she had no idea what was wrong with me. So, she put me on a really nasty ten day course of Biaxin, a very strong antibiotic in the macrolide family. It makes me feel icky, but it does seem to be working.... hopefully it won't work so well that it starts agitating my underlying conditions, like Bartonella and Mycoplasma -- I'm in no mood for a herx!

I am very much looking forward to being done with all of this. I highly recommend not getting swine flu in the first place -- WASH YOUR HANDS!

I'll write updates about what's new in my personal life soon -- but I wanted to get this post up ASAP so you could read Jessica's story and start sending positive thoughts her way!

CCC.

Sunday, April 19, 2009

A "Cross" Reference

Hi friends!

I just wanted to let my loyal readers know that my friend Jennifer was kind enough to feature me on her blog, Praying for Lymies. The link takes you to a mini-bio of me and my disease journey (the long version is below, with a link to the long, long version at the bottom of that). You send an e-mail to post a prayer for me - the directions are at the top - or any other Lyme disease sufferer featured.

So, if you're the praying type, check out the blog and leave a prayer for me. There are plenty of specifics on things I need prayers for, in case you're at a loss for words... ;-)

Thanks and love,
Cat

PS: Sorry for my pun in the title... cross-reference to a prayer blog? There was no way I could leave that one alone, lol.

Sunday, April 12, 2009

For the prayer warriors who are kind enough to lift up my name...

Thank you for your kindness. I cannot express how much it means to me to have the power of your prayers behind me. Jennifer has done a wonderful thing by bringing us all together. Please leave messages here, too, if you'd like. It is nice to hear from people around the world who care enough to do this. I want to keep you all in my prayers too, so I would love to learn more about you. In return, I will try to tell you my story as fully and completely as I can. I hope it will not bore you (I'm kind of verbose)... my goal is to bring awareness to those who don't know much about this disease, and to bring hope to those who suffer as I do: you are not alone.

My case history (minus the personal details... if you want the long version, complete with glimpses of my personal life, visit this post: The Whole Story)

I was bitten by a deer tick when I was three years old. All the signs pointed to Lyme -- fever, flu-like symptoms, painful joints so swollen that I couldn't move, and a grapefruit sized, bright red, bulls-eye rash at the site of the bite (my left ankle). My parents rushed me to the nearest hospital. They started me on IV antibiotics and did a western blot, sure it was Lyme. My mom had even saved the tick but they threw it away. It's definitely Lyme, they claimed, the test will just confirm it.

Well, the test didn't confirm it. I was transferred to the Children's Hospital of the King's Daughters, an outstanding pediatric hospital in Norfolk, VA, not too far from my home. They diagnosed me with EVERYTHING. Juvenile Rheumatoid Arthritis, various cancers, mononucleosis, and a variety of other things. My father still has the tiny bracelet I wore around my wrist, with each diagnosis recorded in his handwriting. When I was eventually diagnosed, as a result of his persistence (along with my mother's), and he told me he had kept that bracelet, I cried.

I spent my childhood knowing I wasn't quite right. I had infection after infection, and my organ systems slowly started to fail in various ways. But what none of us realized was that I had no recollection of feeling well. I didn't know how bad I felt. I fought day in and day out to get up, go to school, take lessons, and somehow managed to stay in the gifted and talented program. I repeatedly won awards for my writing and was a straight A student. But something was just wrong. Fainting spells, a racing heart, headaches, being thin as a rail, aches and pains, opportunistic infections... the list goes on. But though I was in and out of the pediatricians office frequently, and a regular visitor at CHKD, I kept going until I was 21.

I had gone to college a year early, when I was 17, to escape the glares and accusations of a system that labeled me as a hypochondriac, liar, and psychologically unstable. I was blessed with the ability to keep up my grades, so skipping my senior year was an option. Getting out helped, but I started ailing by my second semester. Finally, when I was 20, my adviser called my father and told him to bring me home and figure out what was wrong with me, fix it, and send me back. She believed I didn't feel well enough to attend classes. She knew I was passionate about learning because she took the time to watch me. And she was alarmed by how hard I had to work to do the things everyone else in my class took for granted.

It saved my life. My dad, on the advice of a colleague with Lyme, took me to an LLMD. She put me on Doxycycline. Nothing happened for six months. I had to leave school again. This time, dad administered every dose himself, mom force fed me when I threw up from the side effects, and I woke up in the middle of the night to take certain supplements. But at the end of the next six months I felt... GOOD.

I went back to school and got a 3.75 GPA my first semester back, and a 4.0 my second semester back (it was my senior year). However, by the time I was halfway through the year, my health was failing -- night sweats, tachyarrythmias, exhaustion, and massive, rapid weight loss. I refused to believe it was back, and spent some time in denial (my blog has the whole story). Eventually I found myself with a PICC line on IV ABX, wasting away. I wished for death. I didn't see another way to get relief.

Finally, after six months with the PICC line, my LLMD refused to treat me anymore. She said my case was too complex, she was not comfortable treating someone who was so ill. That's when I found the doctor who changed my life; a soft spoken warrior in Armonk, NY. My "Dr. L." Under his stringent care, my body began to recover. He brought in a neurologist, who helped diagnose my seizure disorder (part of it was instinct, part of it was a 72 hour vEEG that indicated a severe seizure disorder within 15 minutes of footage). Dr. L ordered a SPECT scan, which showed moderate to severe global hypoperfusion (it means low blood flow to all of my brain). He ordered blood work and found so many co-infections... and he got a CDC positive Lyme western blot. Not that it mattered. Insurance companies never fail to find a way out of paying for treatment. But it gave me peace of mind to see all of the undeniable proof. To know that you aren't crazy, to know that the taste of normalcy that you felt during your remission can come back, to think you might someday be cured... it gave me hope. Hope was what I needed.

I have been fighting Babesiosis, my most serious infection, for about a year now. It's still not gone, but the treatment seems to be having an effect on me, at least. It is painful, I can't lie. Some days I would rather give up. But I have to keep going, for all of the people who count on me, who care about me, and who believe there will come a day when I am free. I have spent my life in the chains of a disease that few people believe in or understand. I ask that you pray that we will find the key to release me from these chains... or at the very least, that I will make peace with my cage and find a way to make my life useful in spite of the things that limit me. Thank you again for your prayers. You are all in my heart.

For those who are interested, here is a list of my symptoms. Those which are currently the most troublesome and/or prevalent are in italic red.

-The Tick Bite
1. Tick bite
2. Rash at site of bite
3, Rashes on other parts of the body
4. Bulls-eye rashes

-Head, Face, Neck
1. Unexplained hair loss
2. Headache
3. Twitching of facial/other muscles
4. Bell's palsy
5. Stiff or painful neck
6. Sore throat

-Eyes/Vision
1. Double/blurry vision
2. Pain in eyes
3. Oversensitivity to light

-Ears/Hearing
1. Pain in ears
2. Oversensitivity to sound

-Digestive System
1. Constipation
2. Irritable bladder
3.Upset stomach
4. Gastro-intestinal Reflux Disease (GERD)
5. Nausea w/vomiting
6. Nausea w/o vomiting
7. Vomiting w/o nausea
8. Colitis

-Musculoskeletal System
1. Joint pain and swelling
2. Stiffness of joints, back, and neck
3. Muscle pain and cramps

-Respiratory and Circulatory Systems
1. Shortness of breath, cough
2. Chest pain
3. Night sweats
4. Heart palpitations
5. Edema

-Neurologic System
1. Tremors/unexplained shaking
2. Burning or stabbing sensations
3. Weakness/partial paralysis (intermittent)
4. Pressure in head
5. Numbness/tingling/pinpricks (intermittent)
6. Poor balance
7. Dizziness
8. Difficulty walking
9. Increased motion sickness
10. Lightheadness/wooziness
11. Seizures
12. Myoclonic jerks
13. Narcolepsy

-Psychological Well-Being
1. Mood swings/irritability
2. Feeling as if you are losing your mind
3. Overemotional reactions
4. Too much sleep
5. Insomnia
6. Difficulty falling/staying asleep

-Neuropsychiatric
1. Getting lost in familiar places
2. Dyslexia type reversals
3. Night terrors
4. Panic attacks
5. Ferocious nightmares
6. Brain fog
7. Feelings of rage
8. Abnormalities of taste and smell
9. Heightened sensitivity to vibrations
10. Depersonalization
11. Spatial problems
12. Appetite changes
13. Obsessive compulsive acts

-Mental Capacity
1. Memory loss
2. Confusion/difficulty in thinking
3. Difficulty reading
4. Speech difficulty (slurred)

-General Well-Being
1. Unexplained weight gain and loss (fluctuation)
2. Extreme fatigue
3. Swollen glands
4. Unexplained fevers (both low and high grade)
5. Continual infections
6. Migratory pains
7. Symptoms began with a flu like illness, after which you have not since felt well

********
As I mentioned in my bio, there are two other things I need prayers for. First, my boyfriend Phil, who is also my primary caregiver, needs his spirit lifted as much as I do mine. It breaks his heart to watch me suffer, and it breaks my heart to cause him pain. He has taken the best care of me that anyone could wish for these past three years, and I hope he will be blessed with the same level of healing for his heart that I need for my body. He has been my personal angel on earth, so please ask God to send his angels in Heaven to watch over him. I would also ask a little prayer for the rest of my support network as well... my family by blood, and my extended Lyme family; the people who have supported me and guided me through this, even while their own health failed. I am so blessed.

The other prayer I ask for is also related to my health. I recently found out I may have lymphangioleiomyomatosis (LAM... don't worry, even I can't pronounce the proper name). It is a genetic disease, passed from mother to daughter, exacerbated by pregnancy, which causes multiple lung collapses, cysts/tumors on the lungs, and eventually turns them to smooth muscle tissue. The only treatment at present is a lung transplant (once the lung or lungs are no longer functional), but the disease will eventually do the same thing to the new lung, so it only buys a few more years. The disease moves less aggressively when it is sporadic, more aggressively when it is inherited. My symptoms onset 15 years earlier than my mother's did, and her mother did not have LAM. So, with no cure in sight, this disease is always fatal. It robs you of the ability to have children, not only because you might pass it along, but because pregnancy accelerates the disease. Both of my mom's lung collapses happened shortly after she gave birth.

I am supposed to schedule tests for the disease as soon as possible. A positive high resolution CT scan would clinch the diagnoosis, but a negative one does not rule it out -- it would mean a lung biopsy, of one of the three cysts I currently have on my left lung. It would definitely cause the lung to collapse... and my left lung already collapsed twice, about ten years ago.

Please pray for my mother and I as we wait for these tests and their results. Please pray for our friends and family who are worried about our health. And please pray for us: that we take whatever news the tests bring us with grace, courage, and faith.

Again, thank you for taking the time and energy to pray for me. May God bless you and keep you safe from harm. If you suffer from a chronic illness as well, I wish you healing, good health, and happiness. You deserve it.

Lymie love...
Cat

Sunday, March 22, 2009

Back by popular demand...

It's March, almost April... and my last post was in November. But, I wouldn't be the difficult woman I am if I did things like updating my blog in a timely fashion. It's going to be a big undertaking to do this, but I'll try. Post questions after reading to help me fill in things I didn't think of!

There have been some fairly major events in my life since my last update here. I'm going to try and keep it to the most significant (to me) and the most current news. So here we go...

In December (at the start of law school finals), I made the mistake of asking my dad if I could have my mini fridge and microwave from college (which were sitting in a garage at our other house) upstairs with me so I could eat during the day while he and J (the gf) were at work. They didn't mean to starve me, but I'm not so hot with stairs, and going up and down them to feed myself resulted in a lot of getting trapped downstairs. I also requested an internet connection, since I was borrowing feed from a neighbor (with permission), and it was super slow and unreliable, but it was also my only connection to the outside world.

I felt my requests were reasonable. The microwave and fridge were free and would keep my body healthy, and the internet would keep me sane and help with the boredom and loneliness of being trapped in a dark room while the people who are supposed to take care of me were partying, playing pool, etc. until 1 AM. Not that I complained at the time (much) and I certainly am not looking for sympathy now, but it was pretty shitty of them. I tried very hard to be a good "house guest". However, my dad's reaction to what I asked for still shocked me. I thought he might be annoyed, but instead, he completely exploded. He threw me out. He said if I wanted to stay he would put me in a nursing home. It was clear that he definitely didn't want me to stay.

He left that night and stayed in a hotel (I guess), after attempting to kick me out by calling my (drunk) brother and telling him to go pick me up. My brother (wisely) refused. I called everyone I knew, but I couldn't get out. I was stuck alone at J's house, with no car, no family, and no friends.

When my father came back the next night, he quasi-apologized, agreed to my requests, and said he was going to stop drinking and partying. I thought "woohoo!", maybe this means he'll come up and spend time with me some. I just wanted someone to speak to me. More than five words a day: "Did you take your pills?". So I foolishly said that to him. His response? "Believe me dear, everyone would LOVE to see more of you, we would be so happy if you'd come downstairs." Well, J smokes in the house, downstairs. And it's hard enough for me to tackle stairs to begin with. I said so. Once again, he was off in a tantrum.

Clearly, the situation could not continue that way, with me feeling like a massive burden, totally unwanted, and his unpredictable reactions. I later learned that J had been pressuring him to "deal with me". What in the hell I did to her except stay out of her way and try not to ask her for anything, (after one remarkable instance where I asked if she would mind bringing me a sandwich, since she was making one for herself, and she told my dad that I was demanding and then I got yelled at, resulting in me fearing to ask her for so much as toilet paper for my bathroom) is beyond me. But, clearly dad thought he had major pressure coming from both sides because there was some sort conflict between us. If there was a problem between J and me, I didn't know until that night when he kicked me out -- the night he chose her over me.

I prayed that I would find a way to get out of there without ending up hospitalized. And I did. The moment he was done with his last exam, Phil drove to Richmond to meet my dad and take me away for good. I'm going to interrupt myself for a minute here to reiterate how wonderful my boyfriend is. Even when he fucks up, he's usually trying to protect me.

Anyway, for a while I was really ill after I left. It was tough for Phil to adjust having me in Charlottesville full time while he was also dealing with law school, and it was tough for me to get through the holidays (Thanksgiving, Christmas, New Year's, our 3rd anniversary, Valentine's day, and my birthday, all in quick succession) without totally losing my mind.

I also had a number of medication changes to deal with. My pain medication got switched, for one thing. Apparently you have to switch every three months for it to stay effective, and I'd been on the same thing for over a year, so that might explain why I have been a little grumpy. The new stuff made me sick for about a week, but after that it worked like a charm. I also found out that my thyroid got worse, so my dose of that is going up incrementally. Finally, the biggest change was to start Plaquenil. It's another anti-malarial, a weapon against malaria's cousin babesiosis, a similar tick-borne version of the disease. Unlike Malarone (the other anti-malarial I take), it has a cyst busting property that can crack open bacteria that have gone into hiding. No one knows quite how it works; it just works. So my blood stream has been chock full of toxins. I like to think of myself as a walking bio-hazard.

I now have three bulls eye rashes on my arms: one giant one on the left side that has been growing for a full year now, ever since Dr. L took over my treatment, and two little twins on my right arm, which are getting bigger and brighter all the time. I would like to send my arms to the CDC and IDSA (two arms, two dreadful organizations, must be meant to be!), and say, HA! This is what YOU consider conclusive proof of Lyme disease, without even a blood test needed, and I HAVE IT. From a 22 year old tick bite! So take your Post Lyme Disease Syndrome and (in the profound words of Limp Bizkit's Fred Durst) stick it up your YEAH.

Long term antibiotic treatment works. "Alternative" testing where more than five bands are read works. People with neurological Lyme disease, like me (I have Lyme encephalitis, which means my brain is swollen... it also has low blood flow and a crazy fucked up electrical pattern), have been attacked again and again by these organizations as whiners, hypochondriacs, mentally ill people, attention seekers, and worse. I've probably been on this rant before, but as more time passes the stronger the proof in my case becomes. I actually WANT to let my LLMD do another spinal tap on me (my least favorite procedure of ALL time, and I've had two lung surgeries), so that when the day comes that the doubters are forced to consider the evidence, the man who is saving my life will have that much more information to make our case with. Fuck you, IDSA, the people who -- by letting greed bias the design of your blood test -- wrote the guidelines that kept this infection from being cured when I was three years old. This disease isn't going to kill me... but it's certainly not thanks to you.

OK, enough swearing. How am I feeling? Well, I'm having fewer seizures, and when I do have them they are usually just muscle seizures, not complex-partial or tonic-clonic. I'm still having sleep problems, but it might be because I had to stop taking the miracle drug that keeps me awake, Provigil, because it gives me too much energy and I end up making myself really, really sick after about a week. Speaking of sick, a nasty side-effect of Plaquenil is a loss of appetite and throwing up... so that's been fun. I managed to spit up in public at UVA Law's Libel Show, but fortunately the theater was dark so no one saw. I don't get any warning though, so I'm presently wary about going out. My pain level is better since the drug switch, but I have to switch back soon because the effectiveness is fading. I still run fevers periodically and a low body temperature usually. My light and sound sensitivity are through the roof, and I've also become very sensitive to touch. Anything but the lightest, softest fabrics hurt me. That might all sound like bad news, but it actually means that the medications are killing bacteria and my body can't dump the toxins fast enough to keep up -- yay!

My last comment on Lyme is that Under Our Skin -- the breakthrough, whistle-blowing film by Andy Abrahams Wilson -- is coming soon to a theater near you! I am so excited that the film will be showing nationwide. Here's the website with the new trailer! Check back for the official release date in late spring! I can't wait to see it again on the big screen, and I'm so psyched that all of my friends will finally be able to enjoy this AMAZING documentary at their local theaters. My only warning is that every single person I have watched it with has cried, even while watching the DVD. I don't know if that phenomenon is unique to watching in my presence or not, so if you see it without me, take tissues just in case.

I hate to give such a long update on my health, but it consumes pretty much all of my time and energy, so if you ask me for info, that's what you'll get, I'm afraid. However, keep reading for the few happenings outside the realm of Lyme around here!
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First, in case it isn't clear, Charlottesville is my full time home now. Phil and I live together. My name was always on the lease, but we agreed that he needed a little time to study without me first semester. However, this semester has been much easier, and it seems like we are both much happier when we're in the same place.

On good days, I clean, cook, organize, and do anything else I can while the rush lasts. The rest of the time I have developed a few reliable hobbies that are easier on my eyes, ears, and brain than my old ones. I've taken up sketching, shading, tracing, and drawing... I'm not very good at anything but shading and tracing, but I enjoy it enough to keep trying, and Phil is helping me learn. I have some awesome audiobooks from e-music.com, which I highly recommend for all of your books on mp3 and indie music needs. I have become even more obsessed with good paper and pens thanks to Levenger, a really cool company that caters to discerning readers and writers. I love their TrueWriter fountain pens, Circa notebooks (which come in many sizes and specialties, from blank, to day planner, to grocery list -- and you can move pages around without tearing them!), and much more. They always have great sales and the phone operators usually give you 10 or 15% off even if there isn't one going on, or you'll get a sweet free gift.

As far as my future plans, I am holding off on making any for now. There are some things related to my health that are very up in the air for the moment, and until I know more I am just trying to focus on the present. If things turn out well, I'll go back to considering grad school, law school, careers, marriage, and all the stuff that comes with that... but not yet.

We also don't know where we're spending the summer yet. It depends on where Phil is working. If it's going to be DC or the 757 I will definitely let all of you know so we can catch up!

I know that's not much, but it's all I've got for now. Phil, the cat, and I are all happy here. We do boring old person stuff like snuggle up and watch Netflix. Sometime soon we're going to set up a still life to draw together (Phil and me, the cat won't be participating). We like to read out loud to each other. Phil spends a lot of time in the study doing course work, but he still makes time for me, which probably doesn't seem like a big deal, unless you've been in a serious relationship with a law student, especially a 1L. It's definitely special.

Last but not least, if I said I was going to send you a birthday and/or Christmas present, I still have it and I still plan to. I just got handed kind of a weird hand around the holidays and things have only lately started to normalize. You'll get it sooner or later.

Much love from...
D.W.

PS: I miss you all and while I am currently not taking phone calls I definitely appreciate email updates -- so let me know what's new in your life! xxooxx